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Biotin supplement

My MS neuro has just put me on Biotin supplement high dose (300mg a day). In studies it has shown 91% success in those with primary and secondary MS. I was wondering if any here are on it and if they have seen any improvement with any of their symptoms so far?
Thanks
Share http://www.healthline.com/health-new...ve-ms-052215#2

The results from the Phase III MD1003 Biotin trial were reported by MedDay (the company that developed the drug) in April 2016.

Unless I'm reading it wrong, it looks like 15.4% of patients showed improvement at 24 months.

The primary endpoint was met (p=0.0051) with 12.6% of patients in the MD1003 arm showing a confirmed reversion of progression at M9 (confirmed at M12), compared to none (0%) in the placebo arm. During the 12-month extension phase, patients initially on MD1003 exhibited sustained improvement compared to baseline, with 13.2% of patients showing improvement at M18 (confirmed at M24) and 15.4% of patients showing improvement at M24. When patients in the placebo group were switched to MD1003 for the extension phase, the proportion of responders reached 7.1% at M18 (confirmed at M24) and 11.9% at M24, demonstrating that treatment with MD1003 reversed progression in some patients switched to MD1003.

I couldn't find 91% anywhere in the article from the company that performed the study. But again, maybe I'm not understanding the results accurately.

In any case, improvement in some patients is definitely a good thing. Hopefully you will see much improvement. Please keep us informed on how you respond to the Biotin.

My MS neuro has just put me on Biotin supplement high dose (300mg a day).

Biotin isn't commercially available in dosages over about 10 mg. Where are you getting 300 mg biotin?

Originally Posted by Sharebeaer

In studies it has shown 91% success in those with primary and secondary MS

This is what's concerning. It wasn't stud[I]ies[/I], plural, that showed that result. It was [B][I]one[/I][/B] pilot study (by the company wanting to sell the high-dose product) that showed an outrageously high level of effectiveness. But the follow-up studies have shown only 12 to 15% effectiveness. Based on that, the mega-high success rate of the pilot study is not believable, and some people are speculating that those study results were fake and a PR stunt to get attention for the much less effective results to come.

The healthline article is over a year old, and does not contain any scientific information. It does NOT say that biotin stud[I]ies [/I]showed a 91% success rate. It doesn't contain any clinical data at all. The actual scientific article it links to doesn't say anything about success rates, either. All it says is "promising results" and "Overall, 91 percent of patients given high doses of biotin saw [I]some[/I] clinical improvement in their condition." "Some improvement" is so completely vague that it doesn't actually mean [I]anything[/I]. This is a great example of why just about everything that isn't actually from a reliable scientific source should be ignored. It isn't health information. The healthline article is doo-doo.

So what did your neurologist tell you about the biotin studies when you were put on biotin?

What's concerning is where you got this such wrong information and why these falsehoods are the motivation for what you're doing. And again it's concerning that your neurologist appears to have such easy access to a biotin supplement that isn't commercially made or readily available.

The questions -- for your own safety -- are: what are you actually taking, is it what you [I]think[/I] you're taking, and -- whatever it is -- can it harm you? So that needs to be clarified before you can know if it's worth taking for a 12 to 15% chance of some kind of symptom and function improvement.

As poster KoKo, pointed out, the clinical results that have entered the medical literature are in the range of 12 to 15 percent success, with at least some explanation of what constituted "success." But since there isn't anything that works for the treatment of progressive MS, 12% is better than nothing. If you're in that 12%.

My MS neuro has just put me on Biotin supplement high dose (300mg a day).

Did your Neurologist prescribe Biotin? Biotin is not mg but mcg and 300 mcg is not a high dose. My multivitamin has 300mcg of biotin in it.

I have taken, separate from the multivitamin, 5000 mcg of Biotin (you can buy this over-the- counter. I am doing this unrelated to information about MS and the use of Biotin. My nails (finger and toe) are not growing. Biotin is helping for this.

Diagnosed 1984
“Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

Hi Snoopy? I am not sure... I quoted the results my MS neurologist told me. She has patients who are PPMS and SPMS on Biotin who are doing very well. Perhaps the study you quoted was done on RRMS??? not sure... but at this point I will try just about anything. There are no other treatments for SPMS. I tried Betaseron, Novatrone and copaxone when I was RRMS and none had no effect. I even did two CCSVI procedures and a couple drug studies...nope nothing, nada, no effect... Biotin has little to no side effects and the body eleminates any which isnt used so all pluses to me...
Thanks for replying and sharing this study...
Take good care Snoopy...
Hugs
Share

Originally Posted by KoKo

Hi Sharebeaer

The results from the Phase III MD1003 Biotin trial were reported by MedDay (the company that developed the drug) in April 2016.

Unless I'm reading it wrong, it looks like 15.4% of patients showed improvement at 24 months.

The primary endpoint was met (p=0.0051) with 12.6% of patients in the MD1003 arm showing a confirmed reversion of progression at M9 (confirmed at M12), compared to none (0%) in the placebo arm. During the 12-month extension phase, patients initially on MD1003 exhibited sustained improvement compared to baseline, with 13.2% of patients showing improvement at M18 (confirmed at M24) and 15.4% of patients showing improvement at M24. When patients in the placebo group were switched to MD1003 for the extension phase, the proportion of responders reached 7.1% at M18 (confirmed at M24) and 11.9% at M24, demonstrating that treatment with MD1003 reversed progression in some patients switched to MD1003.

I couldn't find 91% anywhere in the article from the company that performed the study. But again, maybe I'm not understanding the results accurately.

In any case, improvement in some patients is definitely a good thing. Hopefully you will see much improvement. Please keep us informed on how you respond to the Biotin.

HI
My MS neurologist told me about it. She wrote a prescription which must be filled at a compounding pharmacy. I talked with the pharmacist and he has a few MS'ers on Biotin and are showing improvement. He also talked to me about where he sources the Biotin from etc...
My neurologist has a few of her PPMS and SPMS patients on biotin and has seen good results, a lower EDSS for these patients... http://www.nationalmssociety.org/Nat...-EDSS_Form.pdf
I have never been given bad information from my neuro...she is an amazing specialist and human being...
Thanks for your reply
Share

Originally Posted by jreagan70

Hi Sharebeaer:

Your post is both curious and concerning at the same time.

Biotin isn't commercially available in dosages over about 10 mg. Where are you getting 300 mg biotin?

This is what's concerning. It wasn't studies, plural, that showed that result. It was one pilot study (by the company wanting to sell the high-dose product) that showed an outrageously high level of effectiveness. But the follow-up studies have shown only 12 to 15% effectiveness. Based on that, the mega-high success rate of the pilot study is not believable, and some people are speculating that those study results were fake and a PR stunt to get attention for the much less effective results to come.

The healthline article is over a year old, and does not contain any scientific information. It does NOT say that biotin studies showed a 91% success rate. It doesn't contain any clinical data at all. The actual scientific article it links to doesn't say anything about success rates, either. All it says is "promising results" and "Overall, 91 percent of patients given high doses of biotin saw some clinical improvement in their condition." "Some improvement" is so completely vague that it doesn't actually mean anything. This is a great example of why just about everything that isn't actually from a reliable scientific source should be ignored. It isn't health information. The healthline article is doo-doo.

So what did your neurologist tell you about the biotin studies when you were put on biotin?

What's concerning is where you got this such wrong information and why these falsehoods are the motivation for what you're doing. And again it's concerning that your neurologist appears to have such easy access to a biotin supplement that isn't commercially made or readily available.

The questions -- for your own safety -- are: what are you actually taking, is it what you think you're taking, and -- whatever it is -- can it harm you? So that needs to be clarified before you can know if it's worth taking for a 12 to 15% chance of some kind of symptom and function improvement.

As poster KoKo, pointed out, the clinical results that have entered the medical literature are in the range of 12 to 15 percent success, with at least some explanation of what constituted "success." But since there isn't anything that works for the treatment of progressive MS, 12% is better than nothing. If you're in that 12%.

HI
My MS neurologist told me about it. She wrote a prescription which must be filled at a compounding pharmacy.

That's excellent! A compounded version from a pharmacy, or at least pharmacy-grade from a regulated supplier, is the only way currently to get high-dose biotin, and probably the only known safe way. A lot of people are trying to take a high dose by taking a boat-load of over-the-counter biotin that contains fillers and contaminants, and might only contain a fraction of the biotin claimed on the label.

The fact that your neurologist was aware enough of the issues to prescribe a compounded version for you reduces the chances that the misleading Healthline article came from her, or at least that wasn't the only article she gave you.

This has been a great example of how, just because something [I]looks[/I] like a scientific article, it doesn't mean it is. We all have to develop a more critical eye when we're reading to make sure that we're getting factual, helpful information and not being misled.

There is also a Facebook group called "Biotin for Progressive MS" that's pretty helpful. I don't know what you are paying for your biotin, but there are some suppliers there, one of which is run by pharmacists who also have progressive MS themselves. I'm paying $45 for a 90 count bottle of 100 mg. You have to request to join the FB group, but it's no big deal. Just ask and they'll let you in. And they don't scold you.

There is also a Facebook group called "Biotin for Progressive MS" that's pretty helpful. I don't know what you are paying for your biotin, but there are some suppliers there, one of which is run by pharmacists who also have progressive MS themselves. I'm paying $45 for a 90 count bottle of 100 mg. You have to request to join the FB group, but it's no big deal. Just ask and they'll let you in. And they don't scold you.

Study also noted increased lesions in biotin group

In the safety section of the actual study:

"At month 12, MRI examination identified new MS-specific lesions in 11 of the 47 (23.4%) MD1003-treated patients and 3 of the 23 (13.0%) placebo-treated patients (p = 0.36). Four (8.5%) MD1003-treated patients had enlarging lesions (vs none in the placebo arm; p = 0.30) and two (4.3%) had at least one post-gadolinium enhancing lesion on T1 sequence (vs none in the placebo arm; p = 0.99). Five patients had new T2 lesions during the extension phase, including one in the initial placebo arm (5.6%) and four in the initial MD1003 arm (10%)."

In discussion section:

"More new or enlarging MRI lesions occurred in the MD1003 arm than in the placebo arm during the double-blind phase. Future trials should include careful assessment of MRI activity to rule out an unwanted pro-inflammatory effect of biotin. There are no published data on animal models concerning a potential pro-inflammatory effect of high-dose biotin. Of note, MRI was not used to assess efficacy because of the relatively short trial duration which was not powered to see an effect on brain volume."

I found this really disconcerting. I almost feel desperate enough to try it as I have PPMS, but I certainly don't want to get WORSE.

Thanks for sharing sheri.
I was very interested in trying biotin too- have been trying multiple supplements for about 9 months now- but your right we don't want to increase inflammation- I'm taking Tysabri to reduce it.
Ta heaps